Finally reviewed my lab results with the neurologist today, and I'm kind of confused. Apparently i'm in mystery diagnosis land.
My CSF protein was elevated, but had no oligoclonal bands. One of my long-chain fatty acid ratios was also high (like 1.5 and the normal lab range is <.8) but my other ones were normal, suggesting that I have some evidence of adrenoleukodystrophy but not enough lab results to support that diagnosis.
My neuro thinks that I have a combination of a mild form of leukodystrophy and primary-progressive MS, given the extent of the lesions in my brain. Despite that, she's going to put me on DMDs anyway. I'm not sure what I think about that because they've never been proven effective in primary-progressive MS, and I actually don't have primary-progressive MS for sure.
She's going to look into drug assistance programs because my insurance only covers 60% of the cost of DMDs and I definitely can't afford the difference. Meanwhile she's starting me on a 5-day IV infusion of solu-medrol starting tomorrow for the flare that I'm currently in.
Has anyone else been prescribed disease-modifying drugs when their diagnosis ISN'T relapsing-remitting MS? i don't even know if this should be posted in this particular forum since most people are still waiting to get a diagnosis. I now have one...but only sort of, and I'm confused!
My CSF protein was elevated, but had no oligoclonal bands. One of my long-chain fatty acid ratios was also high (like 1.5 and the normal lab range is <.8) but my other ones were normal, suggesting that I have some evidence of adrenoleukodystrophy but not enough lab results to support that diagnosis.
My neuro thinks that I have a combination of a mild form of leukodystrophy and primary-progressive MS, given the extent of the lesions in my brain. Despite that, she's going to put me on DMDs anyway. I'm not sure what I think about that because they've never been proven effective in primary-progressive MS, and I actually don't have primary-progressive MS for sure.
She's going to look into drug assistance programs because my insurance only covers 60% of the cost of DMDs and I definitely can't afford the difference. Meanwhile she's starting me on a 5-day IV infusion of solu-medrol starting tomorrow for the flare that I'm currently in.
Has anyone else been prescribed disease-modifying drugs when their diagnosis ISN'T relapsing-remitting MS? i don't even know if this should be posted in this particular forum since most people are still waiting to get a diagnosis. I now have one...but only sort of, and I'm confused!
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